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FOR SYKE TIL Å STILLE PÅ STØTTEMARKERING, SENDER SKO I EGET FRAVÆR

5. september kl 9.00 starter rettsaken i Oslo Tinghus der “borrelioselege” Rolf Luneng kjemper for å få tilbake sin legeautorisasjon. Fra kl 8.00 arrangerer pasienter og pårørende en stille støttemarkering for Luneng utenfor Tinghuset. Siden mange er for syke til å møte personlig, sender de sko i eget fravær.

For tre år siden ble Rolf Luneng fratatt sin legeautorisasjon og Norsk Borreliose Senter ble nedlagt. En gruppe alvorlig syke pasienter mistet sitt eneste behandlingstilbud og har siden stått uten livsnødvendig helsehjelp i Norge.

– Selv var jeg nødt for å benytte meg av crowdfunding for å ha råd til behandling i Tyskland. Fra å være arbeidsufør, kan jeg i dag jobbe 30 prosent, forteller Trude Eker, som er blant initiativtakerne bak støttemarkeringen.

For “flåttsyke”, er det skremmende å oppleve hvordan norsk helsevesen snur ryggen til problematikken. Et flåttbitt kan medføre mer en “kun” borreliose, men pasienter blir sjelden sjekket eller behandlet for dette. Det er uforståelig at flåttsyke med invalidiserende plager, kun skal få tilbud om to uker med antibiotika, når ungdommer med kviser får langvarig behandling med samme medisin. Norsk helsevesen forholder seg heller ikke til Borreliabakteriens mange former i sin behandlingsprotokoll. Luneng er en av svært få leger i Norge som tar pasientgruppen på alvor, og har klart å hjelpe utallige tilbake til livet. Det blir han straffet for.

Hvem er det egentlig som opptrer uforsvarlig? Staten eller Luneng? Rettsaken vil gi svar på en rekke viktige spørsmål.

– Vi som havnet i denne uvirkelige situasjonen høsten 2013 var i ferd med å miste håpet. Så stevner Rolf Luneng Statens helsepersonellnemd. Rettstaten Norge er vårt siste halmstrå! En mulighet til å snu hver stein, gjennomgå eksisterende erfaringer og kunnskap; sett opp mot retningslinjene for borreliosebehandling, sier Trude Eker.

Vi håper norsk presse vil dekke det som er årets viktigste helsepolitiske rettssak, samt komme på støttemarkeringen fra kl. 8.00.

For mer informasjon, se Support Luneng sin støtteside.

 

Støttemarkering flyer

 

Pressetalskvinne: Trude Eker

Mail: trudeeker@hotmail.com

Tlf: 97 02 21 55

 

 

 

 

ÅPENT BREV TIL NASJONAL KOMPETANSETJENESTE FOR FLÅTTBÅRNE SYKDOMMER

Torsdag 30.juni 2016

I et anonymt innlegg datert 27 mai 2016 på hjemmesiden ”Flåttsenteret” ble NorVects nylige pasientundersøkelse fremlagt. Dessverre er det mange feil i fremstillingen av både undersøkelsen og interesseorganisasjonen NorVect, og vi anmoder om at Kompetansetjenesten for flåttbårne sykdommer enten reviderer innlegget eller tar det ned snarest.

I brevet er det gjengitt sitater fra innlegget på Flåttsenterets sider, samt svar fra NorVect på disse uttalelsene.

 

2015NorVect_Fornebu_FERDIGEfiler_NR (183)

First human case of Borrelia Miyamotoi in Norway

Norwegian patient diagnosed with Borrelia Miyamotoi.

 

What is Borrelia Miyamotoi

Borrelia miyamotoi is a species of spiral-shaped bacteria that is closely related to the bacteria that cause tick-borne relapsing fever (TBRF). It is more distantly related to the bacteria that cause Lyme disease, Borrelia Burgdorferi.

Symptoms include include fever (usually relapsing), headache, muscle pain, fatigue and possibly encephalitis and can be very dangerous for immunodeficient people.

It was first identified in 1995 in ticks from Japan, Borrelia Miyamotoi has since been detected in two species of North American ticks, the black-legged or “deer” tick (Ixodes scapularis) and the western black-legged tick (Ixodes pacificus). These ticks are already known to transmit several diseases, including Lyme disease, anaplasmosis, and babesiosis. Borrelia Miyamotoi has also been dicovered in ticks in several European countries, including Norway, Sweden and Denmark.

Borrelia Miyamotoi was first identified in ticks in Norway in 2015 . See published study from Science Direct. So far there has been no reported human cases in Norway until now.

Currently there are no commercially available tests for Borrelia Miyamotoi, and regular Lyme tests cannot be used. The most accurate way to diagnose is to use DNA testing.

The Norwegian patient in question had blood tested using FISH analysis by Dr. Alan MacDonald. The blood tests show presence of Borrelia Burgdorferi and Borrelia Miyamotoi. See full report below.

Borrelia Miyamotoi in Norwegian patient
Picture in courtesy of Dr. Alan MacDonald, copyright 2016.

Sexual Transmission of Lyme disease

Research from Dr. Alan MacDonald supports the hypothesis of Lyme disease being a sexually transmitted disease. He has done an autopsy of a testicle belonging to a diseased patient with long term chronic Lyme disease suggesting that Lyme can be transmitted from male to female. See his results in the PDF below.

Dr. MacDonald talking to Dr. Marie Kroun

For more information on Lyme and sexual transmission see article by Stricker and Middelveen, 2015

Interview mit Prof. Volkhard Kempf

According to Prof Kempf, the knowledge of Bartonella is in general low in the medical community. There is a lot of wrong information is circulating.

Bartonella infections are frequent, but general practitioners are not aware of these infectious diseases. According to Prof Kempf, Bartonella infections can be diagnosed and treated easily. However if you don’t know what to look for, you will not find it. You need to look for endocarditis, swollen lymph nodes and other rare manifestations.

According to Kempf, only immunosuppressed patients need treatment. They can be diagnosed using serological essays, which both have weaknesses and strengths. You can find a 6-10% seroprevalance (anti bodies) in the normal population. In forest workers there are 30% that have antibodies against Bartonella.

He states that infections diseases are worldwide and will get even more important in the future.

Interview with Dr. Robert Mozayeni

Dr. Mozayeni talks about Bartonella as one of the major co-infections of Lyme disease. It’s more prevalent than Lyme, as there are many more ways to contract the disease (eg. flees, cats). In a study, that Dr. Breitschwerdt and himself published in The Journal of Emerging Diseases, about 60% of Lyme patients tested positive for Bartonella.
Dr. Mozayeni also talks about the importance of looking at Biofilm when treating Lyme, Bartonella etc as biofilm can harbor many of these microbes and be the cause of many symptoms.

Interview with Dr. Armin Schwarzbach

Dr. Armin Schwarzbach talks about the terrible situation for Lyme patients and that they are not getting treated properly. In Germany there is some more openess and doctors are allowed to treat somewhat longer than the guidelines.

He talks about the the bacteria; Borrelia Burgdorferi and its complexity, which again is why this subject is so controversial. Had it been an easy bacteria to diagnose, there would not be so much controvercy. He talks about that the two sides of this controvercy and that they need to come together, as the truth is always in the middle.

Increasingly more ticks studies show that the tick is a dirty needle. There are so many co-infections that can be transfered in one tick bite. This makes the testing system also very complex.

1 day Lyme Conference in Sweden

The board of the Swedish Lyme organization (Borrelia och TBE Förenigen Sverige) invites to a 1-day Lyme Symposium November 22nd (9am-4pm) in Stockholm. Presenters from Germany and UK will hold presentations.

See PDF in Swedish for more information:

Interview with Dr. Daniel Cameron at the NorVect Conference 2015

Dr. Cameron is the current and past president of ILADS. In the interview he talks about his understanding of Lyme disease. He is humbled by doctors that are trying to help patients that have gotten lost in the system. He is also seeing a growth in clinicians that are interested in learning how to better diagnose and treat Lyme disease.

Interview with Dr. Randi Eikeland at the NorVect Conference 2015

Eikeland is the head The Norwegian National Advisory Unit on Tick-borne Diseases in Kristiansand, Norway.

In the interview, Eikeland talks about Borreliosis and whether it can turn chronic. She does not believe that patients that get Lyme disease and not get well can have a persisting infection. In the interview she claims that there is not enough evidence showing that this is the case in vivo. She also goes on to tell about patients that believe they are ill with Lyme disease, but maybe they have something completely different. She does not advocate long term antibiotics.
She explains that certain Lyme literate doctors and patients live in a different world from the one Eikeland and her colleagues live in. She however claims that it’s a good thing to meet at conferences like NorVect to discuss even though one is of different opinions.